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recurrent psa 0.2

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User
Posted 09 Jun 2022 at 09:24

hi,5 years after prostatectomy my psa has reached the dreaded 0.2.  up from 0.16, 3 months ago.i have a telephone consultation with my surgeon on 16/6,he has previously advised me that i can either begin radiotherapy ,now not knowing where source of rising psa occurs or wait until my psa has reached 0.4 and have a pmsa pet scan to locate the cancer and then have radiotherapy. does anybody have any experience of this hobson choice?,is there any scientific papers i could read ? what would treatment actually entail? how severe are the side effects?. what questions should i ask consultant?.im a bit stumped,any help would be greatly appreciated


.thank you joe

User
Posted 20 Dec 2022 at 16:10
John's is consistently higher in August / Sept than the rest of the year - we assume the rise is caused by 6 weeks in France each summer cycling, drinking red wine and eating cheese. Numbers are very low though ... often <0.1 the rest of the year and then 0.1 or 0.11 in September
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jun 2022 at 11:03

Joe, things have moved on in the last few years and scans are getting better at lower PSA levels.  My request for a PSMA pet scan was declined before salvage RT. Despite having SRT my cancer has come back. 5 years on from SRT and I am having a PSMA pet scan next week.


Thanks Chris 

User
Posted 12 Jun 2022 at 21:30
🤣🚢🐟
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jun 2022 at 20:01
good luck peter,my gleason is 4+4 also,it was 5 years before i reached 0.2,hope your psa flatlines.joe
User
Posted 17 Jun 2022 at 22:44

Not sure how well respected this guy is but the following elaborates on the problems of recurrence. I posted earlier in this thread and my oncologists educated guess based on data didn't work out for me.


https://youtu.be/Q2joD360_pI


Thanks Chris 


 

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User
Posted 09 Jun 2022 at 11:03

Joe, things have moved on in the last few years and scans are getting better at lower PSA levels.  My request for a PSMA pet scan was declined before salvage RT. Despite having SRT my cancer has come back. 5 years on from SRT and I am having a PSMA pet scan next week.


Thanks Chris 

User
Posted 10 Jun 2022 at 10:18

Hi Joe,


I'm in a similar situation to you, although I'm two and a half years post op and my PSA has not reached 0.2 yet, both my urologist and oncologist are in agreement that early salvage RT to the prostate bed is the best way forward (or I could wait until the magic 0.2 and have some scans).


Treatment for me entails 20 sessions spread over 4 weeks (5 days x 4) so I get weekends off. My treatment is at another hospital some 45+ minutes drive away so travel is something to consider. 


As for symptoms (going by my paperwork) the main ones being tiredness, urinary frequency, bowel frequency and loose stools apparently. I had to chuckle that there is a 10-50% chance of hair loss in the treatment area. Other symptoms such as infertility and changes in ejaculate are listed, but that happened with RALP.


Hopefully, others who have had RT will see this and add any symptoms. 


Maybe ask what are the pros and cons of radiotherapy now against waiting for scans. Maybe your original diagnosis (T2 or T3?) and post op histology would have a bearing on the decision?


Either way, good luck. 


Kev.

Edited by member 10 Jun 2022 at 10:32  | Reason: Typo

User
Posted 10 Jun 2022 at 11:29
thank you ever so much kev,i wish you well,this is ever so helpful,and will give me confidence when i talk to my consultant,hope you have a great weekend.joe
User
Posted 10 Jun 2022 at 12:55
Your PSA is behaving typically for cancer cells left in the prostate bed - a period of undetectable PSA followed by a steady but fairly slow rise. Men with mets tend to either a) have detectable PSA immediately post-op or b) see a sharp rise within the first couple of years. On balance of probabilities (and based on years & years of data), salvage RT is likely to be successful for you.

However, you mention that it is the urologist who is giving you this advice? Generally speaking, this is not the area of expertise of a surgeon and you should really have been referred to an oncologist when your PSA reached 0.16. The oncologist is best placed to advise you on next steps.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Jun 2022 at 16:56
thank you lyn this is very informative and reassuring,i may well be referred to oncologist on thursday,,i shall as always attempt to dance into my future, hope you have a lovely weekend.
User
Posted 10 Jun 2022 at 20:04

Joe, my cancer 'came back' a year after my prostatectomy.  To cut my story short, I had a psma scan which completely changed the salvage RT treatment field.  I really am a firm advocate of a psma ga68 scan.  It helps take the guesswork out of the area to treat.  I'd also insist on some form of hormone treatment.  I had 18 months of Bicalutimide. 


 


Almost 4 years post SRT, my psa is >0.006.  I've been discharged from oncology.  You have every reason to hope. I was G 4+5 and I'm in a really good place.


Personally, I don't think you should wait until 0.4 for a psma scan but others here who understand these things better may have a more accurate view on that

User
Posted 10 Jun 2022 at 20:16
thank you ulsterman,its kind of you to share your experiences,i now feel better briefed for my consultation,enjoy your good place hope you have a great weekend
User
Posted 10 Jun 2022 at 22:26

Hi,  From what I read there is a chance of finding something with a psma test at 0.2.    At 0.4 there is a better chance but waiting that long is more risky.   If the expected cost isn't too much it might be worth finding about places to have a private scan and if they don't refer you quickly to oncology say you're looking at private scans and will they use it if you do.  I'm not sure of the mechanics of getting a private scan but would think it worth getting your hospitals agreement.   Probably the surgeon isn't the right person to answer this. 


On the other hand you might think it worth having RT without a scan although the latest thinking is that it can refine how its targeted.   All the best.

Edited by member 10 Jun 2022 at 22:33  | Reason: Not specified

User
Posted 11 Jun 2022 at 00:01

I think the advice is getting ahead of the situation. It seems it is the urologist who is saying this stuff. Let's see what the onco says before anyone starts recommending private scans! The onco might take a different view to the urologist and will be in a far better position to advise on that CCG's position on PSMA or PET scan access?


Plus - a big deal is being made about PSMA on the forum recently which might lead some newbies to believe it is the only thing worth having but a) PSMA is not always available and not all cancers show up b) there are also other tracers which are highly effective at low PSA readings, such as FACBC or even choline might pick something up. 

Edited by member 11 Jun 2022 at 00:59  | Reason: Typo

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jun 2022 at 07:35
thank you for your wisdom,i guess i have to wait and see what happens with the consultation on thursday,.ive gathered i should be hoping to be referred to oncologist,i;ll update then,thank you so much,it means a lot to have this space to ponder in,
.in the meantime its a canny weather forecast and i hope you all enjoy a relaxing weekend
,joe
User
Posted 11 Jun 2022 at 11:50
Do more than hope... just say that as you clearly have a recurrence you want to be referred to oncology! In most areas, you would have been referred already so not sure why your urologist is delaying.

There is a possibility that the surgeon is also the oncologist but it is very rare in the UK.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jun 2022 at 12:32

Joe, there was a lot of talk about PSMA scans five years ago when I had a recurrence after surgery. I did have positive margins and extraprostatic extension so always a possibility the cells were local. My oncologist said salvage RT to the prostate bed was " a very educated guess based on years of experience"  As I previously mentioned it didn't work for me and I was unfortunately in the 5 percent of men who suffer with bladder damage. 


Barry sent me a link to a you tube video about  treatment for PCa, attached is a link to another part of the youtube video which us about recurrence, it may lead you to ask a few more questions. Might be worth calling the nurses on this site, the number is at the top.


https://youtu.be/Q2joD360_pI


My scan next week is with the NHS, when I chased up the appointment, I asked using my private health insurance and was told it would not get me a quicker appointment. My appointment is at 17.00, they are obviously putting in some extra hours in to reduce the backlog.


Thanks Chris 


 

User
Posted 11 Jun 2022 at 19:12
OMG that video scared the proverbial out of me!! Single recurrence the whole length of his penis! Spread to the belly button from the robot! OMG!!
User
Posted 11 Jun 2022 at 19:29

Lyn's comment reminds me there are two quotes I found useful.  One is 'don't get ahead of yourself' from a PCUK nurse several years ago.  More recently by a dermatologist 'we are where we are'.  They sort of get you off your horse galloping into the desert.


 

User
Posted 11 Jun 2022 at 19:40

Joe, re-read Lyn's posts.  Full of great wisdom.  You need an Oncologist now.  Don't take no for an answer.  

User
Posted 11 Jun 2022 at 23:19
Wellyeknaa, I can't really advise since I am in the middle of the process myself. But you might feel it helpful to know what it is like from someone slightly ahead.

I had surgery about 6 years ago, but after a couple of years PSA started being a little higher than "undetectable". For some reason it seemed to stall a while in the teens but last year clearly breached 0.2 and I was referred to an oncologist.

The story was that I was in a good position, in that with PSA less than 0.5 and doubling time more than six months salvage RT was likely to be very effective. But also that scans often gave little useful information when PSA was less than 0.5, and that waiting till they might be informative meant there would be more cancer and thus RT needed to work somewhat better. So better to get treated.

So at the moment I am on HT, and PSA has now dropped to undetectable which is good. Unfortunately I am still waiting for RT, partly because they wanted my colon checking (and when that happened a polyp was removed from my rectum) but also because post-Covid both GPs and oncologists have been catching up with a backlog of cases but the availability of RT slots remains fixed. I am just hoping they can schedule it so I don't need yet another HT injection, I am getting a bit fed up of those.
User
Posted 12 Jun 2022 at 14:20
thank you all for your advice,ive taken it all on board and i will use it in my consultation on thursday. im leaning towards being scanned before having radiotherapy,but im sure i,ll be able to discuss all options with an oncologist..does anybody have any views on the sloan kettering cancer nomogram,that seems to indicate hormone treatment plus radiotherapy is very advantageous.thanks again,i wish all the very best of sundays and beyond.joe
User
Posted 12 Jun 2022 at 15:44
All the research suggests that salvage RT is more effective if given with HT although I have noticed on here more recently that some oncologists are telling men they don't need the HT. I have my doubts - if you are going to have one more bash at achieving remission, why not give it the best chance of working? Having said that, my husband hated the hormones and stopped early so only had 6 months; that was nearly 10 years ago so doesn't seem to have caused a major problem.

The MSK nomograms are the most reliable, as they are based on a huge data set. However, outcomes for men in the UK are slightly worse than in the US, and outcomes for men in the North are worse than for men in London / South East so most UK hospitals now have their own version of the MSK nomogram with locally adjusted algorithms. It is still useful to check the relevant MSK but then adjust your expectations down a little bit.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jun 2022 at 16:24
thank you lyn,im a geordie my expectations have never been high,but thanks to you and other contributors i feel much more in control of the process and have a clearer idea of the route forward.
User
Posted 12 Jun 2022 at 16:59
With a name like wellyeknaa, I already knew that you were from the land of milk & honey. I am a Wallsend girl.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jun 2022 at 17:28
pure belta,im a howdon lad exiled in chopwell,which has led to interesting discussions with the newcastle freeman hospital where my consultant is based, as my bloods are monitored in gateshead with an ultra sensitive psa test.
.i had maybe 10 incrementally increasing psa test results before breaching the 0.1 level which is deemed detectable in newcastle...but fair play to consultant at the level 0.083 he recognised slowly rising psa...12 months later and here i am at 0.21...i wonder if those incremental changes couldve been a guide to future action.?
.anyhow thanks again.your advice is invaluable, keep yer feet still, unless your dancing, joe
User
Posted 12 Jun 2022 at 20:08
Okay so technically I am also a Howdonian - Lesbury Avenue - although we moved to Essex when I was young and I ended up in Leeds. Doesn't stop me from loving my football team 😍 and we have a grandchild in Holystone.

How did you know that John & I dance?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jun 2022 at 20:45
dont all geordies learn to dance to their daddies when their boat comes in?.hope you and john all the best,im so much more informed than i was,and thats down to you and all the other kind posters.thank you from a windsor drive gadgie.
User
Posted 12 Jun 2022 at 21:30
🤣🚢🐟
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jun 2022 at 09:24
https://www.cancer.gov/news-events/cancer-currents-blog/2021/decipher-test-prostate-cancer-hormone-therapy#:~:text=A%20large%20study%20has%20confirmed%20that%20a%20genetic,choose%20the%20most%20appropriate%20treatment%2C%20the%20researchers%20concluded.
a paper which indicates a genetic test can determine how likely recurrent prostate cancer is to metatize.

this looks interesting.anybody got any views on if, or when ,genetic testing to determine desirability of use of hormone therapy in addition to salvage radiotherapy for recurrent cancer is available in nhs? is it worth raising with oncologist or is it prohibitively expensive for nhs?
anyhow, keep yer feet still ,unless you're dancing
User
Posted 13 Jun 2022 at 16:03

I did a nomogram some time ago and hormones plus RT was significantly better than just RT. 


Watching the YouTube channel being bandied about on here, with my Gleason of 4+4 Dr Scholz talks of two lots of hormones and chemo to start off with, if the patient can take it.  They also emphasise that the chemo used for PCa, taxere I think it was, is no-where near as toxic as that for other cancers.  I'm just arming myself with background information and reality will strike at some point in the coming months. 


My psa is rising faster than yours but was just beneath 0.1 at the last check.  I reckon it will be over 0.1 now.  A psma scan is said to be only 30% accurate at psa 0.2 and so is it worth it and do I want to know but I think with my Gleason it'll be worth paying for it if necessary.   At your age they should be more likely to throw the book at it.  I don't know what your Gleason is, it isn't in your profile.

User
Posted 13 Jun 2022 at 20:01
good luck peter,my gleason is 4+4 also,it was 5 years before i reached 0.2,hope your psa flatlines.joe
User
Posted 16 Jun 2022 at 12:38
consultation led me to being referred to oncologist but told my case is not urgent so may be some time before an appointment,i decided to wait until psa reaches 0.4 (,was told salvage radio therapy at this point not greatly advantageous and main advantage to ease anxiety of patient) .im to have a pmsa scan if when psa reaches 0.4,next psa test in 2 months..thank you for all the advice,wishing everyone a splendid summer. joe.
User
Posted 17 Jun 2022 at 20:53

I'm in a similar situation to many of the posts above with a climb from 0 to 0.2 in just under two years since my Op. I have an oncology appointment next week to discuss go forward.


I'm curious to know how effective RT can be if the cancer cells can not be picked up by a scan at 0.2


Is it just a case of 'carpet bombing' the area as opposed to a guided missile after a scan gives better location info?


Having escaped serious side effects from the op I'd be loathe to risk RT collateral damage.


Appreciate any thoughts

User
Posted 17 Jun 2022 at 21:00
Oncos make these decisions based on many years of data. Statistically, if a man has undetectable PSA post-op and then it climbs fairly steadily, this is a strong indicator that there are cancer cells left in the prostate bed so salvage RT is likely to be successful. if the man has detectable PSA immediately post-op, there are already cancer cells elsewhere in the body so salvage RT to the prostate bed is probably not useful. If he has undetectable PSA for a while but then a sudden and sharp rise, it is likely that there is a significant cluster of active cancer cells either in the pelvic region or further afield - a scan may help determine whether whole pelvis RT is worth trying.

The other bit of information that helps an onco to make this decision is your post-op pathology; if you had positive margins then salvage RT is probably a good bet.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jun 2022 at 22:18

Originally Posted by: Online Community Member
I'm curious to know how effective RT can be if the cancer cells can not be picked up by a scan at 0.2


Basically, treatment earlier when there are fewer cancer cells is more likely to be effective than waiting until later. Whereas scans are not good at picking up small numbers of cancer cells. There is a risk waiting until the cancer is bigger and visible on a scan means RT might not work as effectively. LynEyre summarises the issues extremely well.

User
Posted 17 Jun 2022 at 22:44

Not sure how well respected this guy is but the following elaborates on the problems of recurrence. I posted earlier in this thread and my oncologists educated guess based on data didn't work out for me.


https://youtu.be/Q2joD360_pI


Thanks Chris 


 

User
Posted 04 Jul 2022 at 10:43

Hi Joe,


My psa started to rise within months of my RALP which was 3 and a half years ago. I was monitored after that with my psa continuing to rise slowly, my consultant happy to wait until my psa had risen to 1.0 as a petscan would then pinpoint the problem more clearly.


I've since had HT which has dropped my psa to undectable, the petscan has shown no spread out of the prostate bed and I've just started RT to hopefully zap the baddies lurking there!!


 


Good luck with your treatment, whenever that maybe


 


Rob

User
Posted 25 Jul 2022 at 06:13
hi, just an update.ive an oncologist appointment 9th august with my urologist recommending i wait unti psa reaches 0.4 then have a pet pmsa scan.im hoping to have an updated psa test before then to track trajectory of psa..im worried about any time lag which may occur but as has been said by lyn life can only be lived forward.as they say in these parts, Howay
,thanks and best wishes to all.
User
Posted 03 Aug 2022 at 15:24
well ive just had some unexpected good news..i dont understand why but my psa has shrunk to 0.183,not sure what to say to oncologist now,can anybody explain what may have happened? im baffled.
anyhow i wish you all the best,will update after my oncology appointment.joe
User
Posted 03 Aug 2022 at 15:59
It doesn't make much difference - it is still too high for a man with no prostate. It may just be the difference between a PSA taken in the morning and the afternoon, or could it have been tested at a different lab?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Aug 2022 at 16:46
thanks lyn,i didnt know psa could fluctuate during the day ,as it happens my blood test was at 9am ,.so its not as if my biochemical recurrence is in retreat,ah well canny thought for a while...hope youre having a canny summer..joe
User
Posted 03 Aug 2022 at 22:14

If you're happy to wait to 0.4 then it maybe means it will take a little longer which sounds good, although wait for the Onco's opinion.


 I'll be arriving at 9am at my next test.  What did you have for breakfast.


 

User
Posted 03 Aug 2022 at 23:14

I have asked medics and research staff about the timing of blood tests and testing. My last few blood tests were all done in the trials room and were in the lab within a few minutes. The pattern was a slow increase.


Previous tests were done at a phlebotomy department of a regional health centre they all went to the same lab as my trials tests. I would have my blood taken any time between 9.0am and 12.30, the blood sat in the health centre until 13.00 when it was taken to my hospital to be tested. My previous test results have frequently  fluctuated. Does the PSA decrease in the time between taking the blood and testing it. 


None of the medical staff seem to be able to confirm whether there has been any research into variations in results linked to testing timings. 


I came to the conclusion we are more interested in our results than the medical staff that treat us.


Thanks Chris 

User
Posted 04 Aug 2022 at 05:52
the pcuk nurse i talked to seemed to indicate there is no scientific consensus on reasons behind fluctuating psa, i cant find any research on line..i think chris may be correct in his conclusion
.on the one hand the lowering of psa ,as peter says ,is a positive as it may indicate delay of any required treatment,but doubt in the process never good (why measure so sensitively if measurements can vary due to outside factors) and as trend over 12 months still upward,and as lyn says psa still too high for a prostate less man,i have to place trust in oncology..be interesting if they have different emphasis to urologist.,though as my psa now below 0.2,im now below treatment threshold on tyneside.
..as for my breakfast im a granola grandad,well thats what my grandaughter calls me.thank you,gan canny,joe
User
Posted 09 Aug 2022 at 10:16
just had my phone consultation with my oncologist,was meant to be in person but ive got a cough
,he agreed with urologist that it would be prudent for me to wait until my psa reaches 0.4 then to have a scan then any treatment decisions can be better informed.
he said the recent dip in psa was interesting and he had seen case of mens psa stabilising around 0.2, but as the overall trend of my psa is slowly increasing with a doubling time of 12 months i should ,expect to be at 0.4 threshold in a years time.thank you all for your support,
User
Posted 12 Oct 2022 at 14:37
latest psa result was 0.188..an incremental increase over 2 months..im delighted at that,consultation with urologist tomorrow,where i'll ask about flucuating psa..wishing the best of health to all
joe
User
Posted 12 Oct 2022 at 23:01

0.21 in June,  0.183 in August, 0.188 in October.  That's pretty amazing. How it toys with us.   Mine went 0.06 to 0.09 then to 0.07.  Not sure what it means although putting off treatment as long as possible is an attractive idea.   If you're still happy about waiting to 0.4 then it must seem very good especially if you can push things out to spring and miss the winter rush.

User
Posted 20 Dec 2022 at 10:03
just had my latest psa test, its down again to 0.173,!!!
i divvnt knaa whats ganning on, but i like it.
.glad i didnt start radiotherapy at 0.2..
.during my last consultation the oncologist did mention he;s seen some men whose psa rise towards 0,2 then stabilise.guess im one of those..cant infer to anybody else's results,or tothe future,,but maybe food for thought towards the debate
,wishing all a canny christmas,
User
Posted 20 Dec 2022 at 11:04
Great news! Has it gone down or stabilised at this time of year before??

Mine has been stable / gone down a bit over the autumn/ winter for the last 2 years and seems to go up in the spring..


User
Posted 20 Dec 2022 at 14:12
thank you for reply francij1,
thats interesting that your psa growth rate is seasonal;
for the 5 years up to this summer my psa was slowly accelerating from 0.03 post op to a high 0f 0.21 in june,,i was offered salvage radiotherapy but also the possibility to wait,until psa reached 0.4,since then my psa has fluctuated around 0.18...im hopeful now of it never reaching 0.4,,but as doris day sang que sera sera..have a lovely christmas.
User
Posted 20 Dec 2022 at 16:10
John's is consistently higher in August / Sept than the rest of the year - we assume the rise is caused by 6 weeks in France each summer cycling, drinking red wine and eating cheese. Numbers are very low though ... often <0.1 the rest of the year and then 0.1 or 0.11 in September
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 May 2023 at 12:04
my latest psa is 0.204,so just bouncing along,feel very fortunate
,more interestingly ive been diagnosed as being deficient in vitamin d,
"its cold up here in summer",ive read bits and pieces linking vitamin d deficiency to a greater risk of developing prostate cancer,but im wondering if it may account for apparent seasonality of fluctuating psa..anyhow off to catch some sun,the best of luck to you all
 
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